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Am I Healing?


Glutenfreefamily

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Glutenfreefamily Enthusiast

I have been glutened twice by accident. Both times I had some obvious symptoms mainly horrible brain fog and feeling stupid for a few hours but not near as bad as before where I had to run to the bathroom for hours on end. I have always read that your symptoms get worse when you are gluten free after a while. My household is gluten free completely and my whole family is gluten free. The only thing if I am getting glutened slightly and not realizing it would be lays potato chips ( regular bag not stax) and Im not as sensitive to it as I should be.

I have not been tested yet but my symptoms are obvious. Im trying to heal and avoid any other foods that might trigger intolerances and I stick to whole foods most of the time, its rare I eat a chip here and there.

Did anyone else's symptoms become less to being glutened after going gluten free? I feel like I should be thankful that during accidental glutening that I am not as bad but Im concerned Im not healing.


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Ursa Major Collaborator

My reactions to gluten are still pretty bad, but they are not nearly as bad as before I went gluten-free. So, it can go both ways.

Glutenfreefamily Enthusiast

Thank you :) It puts my mind at ease.

JNBunnie1 Community Regular

Hi! I've actually found that my symptoms are milder in the past year when I get glutened than before, I've been gluten-free for about three years. It's apparently unusual to have milder symptoms after you've been gluten-free for a while, but not unheard of. Also, how long have you been gluten-free? If it's only been a month or two then you won't be sure yet how you'll react a year from now, or five years.

Glutenfreefamily Enthusiast
Hi! I've actually found that my symptoms are milder in the past year when I get glutened than before, I've been gluten-free for about three years. It's apparently unusual to have milder symptoms after you've been gluten-free for a while, but not unheard of. Also, how long have you been gluten-free? If it's only been a month or two then you won't be sure yet how you'll react a year from now, or five years.

Thanks :) Its been about fifteen months since I went gluten free.

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
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    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
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      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
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